Re: Just joined and have lots of questions

March 23, 2011

,

By definition, cerebral palsy is brain damage that occurs near or around the

time of birth. It doesn't specify which area of the brain, nor does it specify

the result of that damage, only that the damage is there. Children with CP,

don't have a " look " , they can also have concurrent diagnoses. Many of us have a

stereotypical person with CP in our heads, but most people with CP look pretty

close to " normal " , they might just have a different gait pattern, need crutches,

need speech assistance, or be slightly different.

I have an older child with CP, and a younger child with what I think is possibly

CP and dyspraxia. Each of them are unique, and neither would fit into any

category you would expect if you saw them. Many of the doctors we have seen are

hesitant to put it all together for us, as well. Our family approaches therapy

late, and in a much lighter fashion than many people do. We have done a lot at

home, much of the stuff done in therapy is easy to copy at home and integrate

into daily life. In short, I believe in letting a child be a child.

Getting a CP diagnosis for my oldest has been instrumental to maintain her

adjustments at school. Now in 7th grade, she needs few modifications, however

just having that diagnosis has allowed us to get help at very important times,

intermittently. Our youngest is getting Early Intervention, and will be 3 in

October. We still don't have a solid diagnosis on paper at this point for him.

It sounds like your little guy is making huge improvements. I'm so glad for

him, you, and your family! From my perspective, I wouldn't quibble over the

diagnosis, the treatment will be the same no matter what you call it. He is a

unique individual, and his therapy will be tailored to him, not his diagnosis.

Allowing a diagnosis to be made, will allow the IEP to be made in school, when

the time comes.

My kiddos aren't cerebral palsy people, they are people with a diagnosis, that

really means very little about who they are. And they are really wonderful

people.

Cari

" Some days, doing 'the best we can' may still fall short of what we would like

to be able to do, but life isn't perfect â€“ on any front â€“ and doing what we

can

with what we have is the most we should expect of ourselves or anyone else. "

~Mr.

________________________________

From: <galbagang@...>

Sent: Wed, March 23, 2011 12:27:07 PM

Subject: [ ] Just joined and have lots of questions

Whew, I am so glad to have found this group. I am mom to 4 amazing kiddos, 16,

14, 12, and last May we adopted our son from China. He is now 38 months old.

We knew he had many delays and had received therapy services while in his foster

home. The PT in China had commented she thought he had CP. He has been with us

now for 10 months and has simply blossomed in so many ways. So here is where we

are now. He has very few words along with a few sound approximations. However,

he is quite vocal with the sounds he does have and VERY animated with his facial

expressions. (I think that means we can rule out oral apraxia??) He has poor

trunk control and very poor balance and therefore isn't walking unsupported. He

also has poor fine motor control. This last week I read 'Latetalkers' and felt

like I discovered the key to explain everything we are seeing. We have yet to

meet with a MD or therapist that seems to be able to " put it all together " . We

have met with a ped neuro a couple times. He ordered an MRI and it showed areas

of damage most likely from oxygen deprivation around birth. Part of what was

involved was part of the motor cortex. He flippantly said that the MRI

explained all of Liam's defecits and called it CP. That has so not sat well

with me because Liam does not look at all like a child with CP. He does have a

little increased tone in his left ankle. To be honest, the ped neuro never

really even asked us about Liam's speech. That was in January and I feel like I

was just starting to make sense of everything. It is like the more I learn, the

more questions I have. So I guess here are my questions: 1) if there are areas

of damage in the brain involving the motor planning parts, is that the same as

apraxia or is it called somethinig else? 2) he is receiving ST 4x/week x 15

minutes each (total of 1 hr). Based on the matrix in the book he should be

receiving 90+ minutes/week. His speech therapist agrees that he has a motor

planning problem but how can I gauge (tactfully yet adamantly) whether she has

the skills to treat him? and 3) he is taking omega 3 DHA (Nordic Naturals). It

sounds like NV has been proving to provide significantly greater benefit than

Omega 3 alone-is that right? I am thankful to have found a group with other

parents who are experiencing what we are. Thank you in advance to anyone who

can help.

March 23, 2011

Hi and welcome Liam's hero!

I just read Cari's response as well and wanted to concur with her feeling about

the diagnosis name vs the importance of securing appropriate therapies -I have

below a recent message about chromosomal testing and in it I have information

about CP...which to break it down means the doctor you saw was most likely not a

good doctor.

OK your questions:

1) if there are areas of damage in the brain involving the motor planning parts,

is that the same as apraxia or is it called somethinig else?

Apraxia is a motor planning disorder. While I agree with Cari about the

diagnosis about CP, in theory most of our children in this group have a

communication impairment that is multifaceted and neurologically based. We can

refer to this a number of ways, but it may not show the same as clinical

traumatic brain injury on scans as a growing brain presents differently. But

there does appear to be areas of the brain that are either not functioning as

well, or that are dormant. In various studies when they use SPECT scans on

those with say stuttering disorders they find that the speech area is not

centered to the left hemisphere as it should be. Stuttering is another form of

a motor planning disorder. I suspect that many of our children utilize far more

areas of the brain than the norm. When they are good at saying a word or

phrase- I bet those are the few that make it into the motor memory of that left

hemisphere. So while none of us like the use the word damage -it's good for all

of us to know that there is much hope via therapy, nutritionals and other

strategies to help. It's the world of epigenics too that I find so fascinating.

Here's a video on this -while not on our population you can pull from the same

theory

and as far as our children

here are some recent blogs I wrote based on new findings and what we are seeing

with NV

Neurogenesis; Does Mother Nature Know Best?

http://pursuitofresearch.org/2010/11/22/neurogenesis-does-mother-nature-know-bes\

t/

Two new studies…choice is diet or drugs to help TBI/traumatic brain injury

(research amino acids)

http://pursuitofresearch.org/2010/10/15/two-new-studies-choice-is-diet-or-drugs-\

to-help-tbitraumatic-brain-injury-research-amino-acids/

Added protein/amino acids and or enzymes help those with autism?

http://pursuitofresearch.org/2010/11/11/added-proteinamino-acids-and-or-enzymes-\

help-those-with-autism/

2) he is receiving ST 4x/week x 15 minutes each (total of 1 hr). Based on the

matrix in the book he should be receiving 90+ minutes/week. His speech

therapist agrees that he has a motor planning problem but how can I gauge

(tactfully yet adamantly) whether she has the skills to treat him?

In general by the time a child gets to therapy and settles down the 15 minutes

can be 5 minutes. I personally think a session should be at least 20 minutes

but perhaps some of the SLPs here can jump in. What I would do is find a local

support group and find other parents who can recommend professionals that they

love. Take your child for a second opinion with another SLP- because none of us

will know what is " good " or " bad " in therapy as a newbie (unless we ourselves

were an SLP So what you can go by are goals set by " experts " that can be the

PhD in the area you see once every few months that oversees program of therapy

and the progress -and can gauge that your child should be making X gain in X

amount of time.

Over time you will become better at recognizing therapists that work better with

your child. And your child's progress of course will show that too. You have

the matrix already -so is the 15 minutes a week in your child's IEP through the

school SLP? Do you have a private SLP?

3 DHA (Nordic Naturals). It sounds like NV has been proving to provide

significantly greater benefit than Omega 3 alone-is that right?

Here's a page on the essential fatty acids

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/

While fish oils provide the essential fatty acids the NV provides the essential

amino acids and nutrients 100 percent via food grade sources which is the purest

form of supplementation. An essential nutrient is one your body needs to

consume and can't produce- so one essential nutrient doesn't replace another

essential nutrient. While I do believe that the results we see with NV are more

dramatic, in many more areas, working it appears for so many conditions, ages,

and pretty much across the board as we have here from our survey

http://pursuitofresearch.org/pursuit-of-research/ you don't want to stop the

fish oils. I wouldn't with the fish oils either use a plain DHA. We found

higher EPA to DHA with a small amount of Omega 6 GLA to be some of the best

formulas over the past decade. Fish oils appear to work for about 80 percent of

our population- that was according to a conference that Dr. J Stordy presented

at who has done research in the UK for kids with dyspraxia, ADHD and dyslexia.

Typically we see results within a day to 3 weeks with an average of about a week

for most. NV as some SLPs are finding in their practice or those in support

groups are seeing with various members in person has what appears to be a 100

percent success rate as it says here

http://pursuitofresearch.org/pursuit-of-research/ NV typically works in a day

to three days and typically within a week the parent is getting positive reports

back from the professionals about the remarkable surges in the child and in most

cases the professional is a teacher or SLP that is unaware the child is on NV as

most parents only share with their child's ped. However today more and more

SLPs are the ones sharing this with their client's parents as they have seen the

surges in other clients as I have some professional anecdotal here

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-treatment-of-speech-impairments/

If you let us know what state or country you live in perhaps as a group we can

share support sources in your area. Based on your email I would recommend

finding another neuroMD and have at least one more SLP exam. You may want a

private OT exam as well to confirm or rule out there is hypotonia in the truncal

area which is pretty common in our group. Weakness in that area affects breath

control which is critical for speech -and the therapy to stregthen that area -my

son found it super fun even though it's hard work. OT and SLP can be very fun

for kids while much is being accomplished therapy wise when done well.

Here's a link on parent friendly soft signs from our old Cherab.org website

http://cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

With parents like you out there searching most in this group have children that

are mainstreamed by kindergarten and are good students. I have a few messages at

our apraxia.org facebook site for new members

http://www.facebook.com/topic.php?uid=115029735601 & topic=13085

or

http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

Below is the archive I promised on why it's true diagnosis names don't always

matter

~~~~~~~~start of archive I wrote not long ago

Yes I agree that the testing is important just to see if there are any possible

answers. But- and this is for me the real point -if it means nothing in the

sense they can only tell you that your child has an abnormal reading but not say

what it means -and especially when the parent who is normal functioning has the

same " abnormal " reading -yes -I think that kind of information can make a parent

feel bad for no reason.

One developmental pediatrician once told me that if a child has high tone in the

extremities and low tone in the body that in itself it CP, but most " good "

doctors won't use that diagnosis on the evaluation and instead will just put the

high and low tone because " they know they will greatly upset the parent for no

reason because CP is not progressive and can be very mild and in the case where

there is nothing to be gained from the knowledge a good doctor will know the

diagnosis CP will upset the parent so will just provide the information in a way

that won't upset the parent. "

So from what I'm hearing today's chromosomal testing probably falls into that

same boat. Yes all should get their child tested -but the way they present the

findings should be more sensitive to the parents- especially when one of the

parents has the same abnormal finding.

Perhaps there are ways as in the case of CP where the news can be presented in a

way that provides info without upsetting anyone. The fact this topic is

creating such strong feelings means there are parents that are upset. And think

about it, we're thinking of our children and many of us including me have not

been tested recently. ....chances are if I was to again be tested today I'm

abnormal and so are most of you reading this is you have a child with autism or

apraxia.

I remember most of us being so relieved to find out there was " nothing " wrong-

and yet again if the quality of the testing today was available then I'm sure

that would not have been the case. I too wish that if the improved the testing

that it would provide more answers on how we can better help our children, and

perhaps in another decade or two or more from now we will have more answers.

So in short -yes a " normal " looking individual can have the same " abnormal "

findings as one with today's apraxia or autism etc. And that means????

~~~~~~~~~end of recent archive

=====

March 25, 2011

Cari and , thank you for your replies. Cari, I apologize if my comment about

my son not looking like someone with CP offended you. You are 100% right that

there is no stereotypical look. I have spent countless hours trying to learn as

much as I can and the best stuff I have learned has been from other parents. I

am hopeful to forge a relationship with either a doctor or therapist who can

really walk me through everything going on. I agree that the bottom line is

that you treat the kiddo in front of you but IMHO I think understanding more of

the process can help with treatment strategies (LOL-I am 100% sure that if it

doesn't come in the form of play, my 3 y/o won't be too interested no matter

what my explanation is!)

, thank you for all your information. I poured over your comments and

looked into the links you attached. I am in awe of your vast knowledge and the

inspiration behind your passion. To answer a few of your questions...we live in

St. , Missouri which is just west of St. Louis. Liam turned 3 in January

and now goes to pre-school to receive his therapy 4 mornings a week. He

receives 1 hour each of PT/OT/ST. We are on a wait list for out-patient therapy

at the facility I think has the best therapy for his needs. That being said, I

am not 100% sure they are the best place. I would LOVE to hear from other

parents but now am just relying on what the facility says they provide. As far

as learning about the qualifications of his current SLP I am mindful to be

respectful as they are all nice and seem to genuinely care about our son but

also because Liam will be there the next 2 years. Regardless, I would do

anything to make sure I am doing everything I can in Liam's best interest.

Lastly, I spoke with my husband and we are totally on board with trying NV. We

are blessed that our son is not a picky eater. Is there a suggestion over

whether the kids like vanilla or chocolate better? I guess I need to spend more

time looking at exactly what I need to order. I see that you answer many

questions regarding NV and don't want to make you repeat yourself-I can search

through previous posts.

Once again, I am soooooooo thankful to have found this group.

Paige

>

> Hi and welcome Liam's hero!

>

> I just read Cari's response as well and wanted to concur with her feeling

about the diagnosis name vs the importance of securing appropriate therapies -I

have below a recent message about chromosomal testing and in it I have

information about CP...which to break it down means the doctor you saw was most

likely not a good doctor.

>

> OK your questions:

>

> 1) if there are areas of damage in the brain involving the motor planning

parts, is that the same as apraxia or is it called somethinig else?

>

> Apraxia is a motor planning disorder. While I agree with Cari about the